Differences

I'm asked a few times a year aobut the differences in raising Deaf and Hearing children. I usually say something like, "Oh, it's pretty much the same", or "there's not much that's different". Sometimes I say something about "if I was already fluent in ASL, it would be exactly the same". That's not entirely true. While it would have been so much easier if I had known sign from the get-go, and had for whatever reason decided to raise all of my kids bilingually in English and sign, I was born and raised Hearing. That's different no matter which way you try and turn it. Deaf is a new culture and a new language, it's a little scary to me sometimes because my first and natural language and tendency is for sound and hearing. I'm learning to be more visual, and to understand that that's the primary way my kids are taking in the world. That said, it terrified me when L was 2 1/2 and she decided to crawl in a stuffed animal box in her closet for her nap. Long story short, we found her about 45 minutes after we didn't find her in bed where we had put her. The police and a search team got involved after we called 911 thinking she had left the house, wandered off, or worse... I kept telling them "she's deaf, and she's not wearing her hearing aids. You could be 10 feet away yelling for her and she wouldn't hear you!" Day to day, this lack of hearing has just been something to get used to. Our house has long since adjusted to finding a kid, or banging on a wall (lol) to get their attention when they're upstairs. We regularly wave a hand, stomp a foot, tap the table, etc before we sign/say something. So, it's a difference in mannerisms and culture that we've mostly had to adjust to. Oh, and learn a new language as adults. :) Recently, J (age 7 1/2) has had a few friends down the street come play. They come play a lot now. He asked to go to their house a few weeks ago. By himself... I know he should be able to walk or ride his bike a few houses down, but I don't want to let him. My mind goes all these places that make me hesitate, or walk with him. I know all parents feel like that when their kids do all these first independent things, but I feel like I go a step further. J doesn't know how to make a phone call, and if he did, he wouldn't be able to effectively hear me. People don't always understand his speech, and he doesn't have a good enough grasp of English for some one new to understand what he's trying to say. I know he'd probably be fine, but his communication delays, even still, give me pause. Maybe I'd feel differently if he was hearing, or if we had learned he was deaf sooner and he wasn't still trying to catch up. The other differences for a Hearing parent raising Deaf children are mostly to do with Hearing Aids, audiology appts, etc. Parents of hearing kids don't have to worry about babies chewing on their hearing aids, toddlers flushing them down the toilet, hearing aids getting wet in the rain, from sweat, an unexpected jump in the pool, etc. We see our audiologist more than some of our friends between the 3 kiddos' appts. :) The differences have been a whole new world opened to us. A new group of people I would have never gotten to know, which has led to some really good friends, and a best friend for me. Appreciation for a different perspective, a different history, a different reality. But, still... we're all the same, kids are kids. J likes to read, play outside, anything outside for that matter, loves reptiles and amphibians, loves his dog, asks his Dad to take him fishing, gets in trouble, jumps on his bed, and he happens to not hear very well. L loves dolls and pretend play, Rapunzel and Strawberry short cake, her favorite friend H, getting dressed and changing her clothes, giggling with her sister, playing outside, and she needs you to communicate visually because her ears don't work very well. R plays most with his animal toys and blocks, he likes to swing for a few minutes, but then wants down because he likes to move, he's sooo busy, if he can, he'll crawl up the stairs, dump dirst out of potted plants, empty the kitchen cabinets, chew on his hearing aids, etc, and his first words have been signs, because that comes more naturally to him because he can't hear speech. What are your kids like?

Sometimes, I get this nagging voice in my head that the reason those kids down the street don't come to play with J anymore is because he's different, he's Deaf. They were fine until their parents met J... Sometimes I want to make an announcement at the grocery store: "Stop staring at us; yes, my baby has hearing aids; don't tell me you're sorry; don't stop talking to my son after he starts talking and you don't understand his speech or see him signing, he asked you a question; we, they, are just like YOU!" Sometimes, it's really hard to get things done and sign at the same time, like when I'm carrying stuff and trying to have a conversation with L. Sometimes, I wish I could just be fluent in ASL today! Why didn't I learm this earlier when it was just a fun thing for a high school girl to learn?? Too bad I couldn't have seen the future! Sometimes, I think about my life 10 years ago, and that if you had told me I would have 4 children, and 3 would have significant hearing loss, I'd tell you you were nuts. Sometimes, I see a purpose for myself. The divide between Deaf and Hearing is way too wide sometimes. Sometimes, I am overwhelmed with gratitude, and how much I love my children, and my husband... all the time~

Can I just say again how thankful I am for our D/HH program? L has been going to school now twice a week wince Christmas, and she's doing wonderfully! I ask her every Tuesday and Thursday morning if she wants to go to school today; every time she responds by excitedly signing all of her teachers' names and that she's going to go play at school, and that she needs to get dressed, get in the car, and the car will go up the driveway and down the street(using the classifier for vehicles and her own sound effects!)! :) We learn more and more about other programs for Deaf children, especially those in public schools, and how much they lack, either in funds, personnel, or otherwise... People really still think that Deaf people and Deaf children won't progress as far as a Hearing person?? Or that ASL doesn't have merit as a real language?? I can't begin to tell you how inflamed that makes me... However, we have apparently lucked out, and we have a whole team of fabulous people who not only care about our children, but push them to excel everyday. Yay!!

Spring!

Whew, Spring is always such a busy time in our house. (Hence, my lack of blog posts - it's my excuse and I'm sticking to it!)

Lots of new experiences, and opportunities for new vocabulary/signs! A few of the highlights: U-pick strawberry farm, our chicks hatched, planting in the garden, many festivals and seasonal events ,...

R's new favorite thing is to crawl ALL over the yard and anywhere else we go. We're at that stage, 12-18 months old, of constant movement. By the end of Spring, he should definitely know "grass", "dirty", "bug", "stay here", and "bath"! Haha! :)

Sear these days into my memory!

L and I were reading some books last night in her bed. She was a little distracted until she moved a blanket and saw... her baby doll! She made her excited face. "Mommy, wook-it!" Then, she looked baby straight in the eyes, and signed and pointed out all the things on each page that she was looking at. Then, she asked baby if she wanted some milk (in ASL complete with facial expression as only a 3 year old can do), and lifted her shirt and put her baby to her little chest to "nurse"! After another page or two, she began showing baby more things from her book.

Boy, has she been paying attention! Haha!

Woo-hoo!

R is signing!!! (He'll be 10 months on November 30.) We've seen "eat", "more", and maybe "finish" and "butterfly". I know "butterfly" sounds unlikely, but we have butterflies hanging above the changing table, so it's a sign he's seen pretty much every day, and it was L's first sign too! So exciting! Here we go!!

And, L starts school with J's D/HH teacher, interpreters, and speech therapist in January. Just moving right along in our house!

Perfect Sequence

Sometimes things occur in perfect sequence. I recently read an article called "Music to Her Ears" in Parenting magazine that upset me with its bias toward and misrepresentation of cochlear implants. I've been working on a response letter to the magazine. I've had a difficult time organizing my thoughts - the topic of raising deaf kids is a sensitive one for me! :)

So, after a few weeks of reorganizing and rewriting my thoughts, I came across this blog post by Rachel Coleman. Everything I read by her makes me a bigger fan of hers. Please enjoy this and consider its message!


My Two Cents: Cochlear Implants
Dated: 7 Sep 2011Posted by Rachel ColemanCategory: Crazy Little Thing Called Life, My Two Cents19 CommentsI used to feel sorry for children who had cochlear implants. I did.

When I saw them it broke my heart because I really believed that their parents just didn’t understand deafness. I judged those parents. I assumed that the parents were looking for a quick fix to something that in my opinion didn’t require fixing. I said things like, “I would never do THAT to my child.” Aaron and I talked about giving Leah choices and we decided that she could choose to have an implant when she was age 18.

We think that Leah was born profoundly deaf. We didn’t discover her deafness until she was 14 months old. When her deafness was diagnosed we immediately started signing with her. It seemed the obvious choice, I mean, she was deaf. We never bought into the old wive’s tale that signing would delay our child’s speech. Many people warned us that Leah might never learn talk if we signed with her. I always laughed and said, “She’s deaf, she might never learn to talk anyway!” My concern wasn’t for my child’s ability to say words. I wanted much more than that! I wanted full connection and communication with my daughter. I wanted her to be a critical thinker.

When Leah was seven she was no longer using hearing aids, because, as she put it, “They don’t work! They don’t help me, they just make my ears itch.” She had gone without amplification for a few years and then, at age seven, my daughter asked for a cochlear implant.

Let’s just say there were a few things I had to get over… oh, like realizing that some people out there might judge me, just as I had been so judgmental of others. (Ouch! Ouch! Ouch! Don’t you hate that one?)

Leah has now been implanted for seven years, the same amount of time she had gone without hearing a thing.

I have found that one of the BIGGEST misconceptions still floating around when it comes to choices in deafness is in thinking that sign language and cochlear implants are mutually exclusive. They are not. Actually it is our family’s experience that Leah’s success with her cochlear implant was because she was already fluent in American Sign Language* when she got her implant AND because we have continued to sign with her. We never stopped signing. (*She was also already fluent in written English by that time)

When someone receives a cochlear implant there is a period of adjustment as the recipient begins to understand the sounds of the world around them. It was invaluable to us to have a full language (American Sign Language) to communicate with Leah during this new learning period. We had full and complete communication as our child experienced the sometimes scary world of sound. Yes, our ENT told us to stop signing immediately after Leah’s implant surgery, which was baffling to me. “She just had major surgery and you want us to refuse to communicate with her through recovery? Her implant won’t be turned on for weeks and you want us to stop communicating with her?” To me that sounded like a form of child abuse. We never stopped signing with Leah and we never will stop.

Leah is a very successful implant recipient, we feel that these are a few of the factors that helped her to use it so successfully.
1. Leah chose to have an implant, it wasn’t something that was done to her. She was old enough to control the settings and she was old enough to ask to be “re-mapped” when she was ready for more sound. We viewed the implant as another tool to help Leah communicate, not the only tool.

2. Leah was already bilingual when she was implanted. She understood ASL and her written English was exceptional. She was reading beyond her grade level. With the addition of her cochlear implant she could simply focus on acquiring and improving her listening skills and pronunciation, because now she could actually hear some things. She wasn’t trying to learn English with her cochlear implant, thankfully she was already fluent in it and her focus was entirely on learning what English sounded like and how to make those sounds herself.

3. We always focused on our child’s strengths. Prior to her implant, we did not do private Speech Therapy. Why? Simple. Because Leah couldn’t hear:) We didn’t need her to learn how to say words in order to connect and communicate because we all learned to sign. Speech is a skill that your child has a lifetime to acquire.
Speech is not a language. Speech is one way to deliver a language.
English is a language, American Sign Language is a language, but speech… speech is a skill.

You want your deaf child to learn their first language before the age of 3 if possible. If they can’t hear, don’t waste your time and theirs trying to get them to learn a listened to, spoken language. Since Leah couldn’t hear English we didn’t try to get her to learn it through speaking. She learned it through reading and writing.
(If your child is deaf please read #3 until it makes sense. Do not get stuck with the thought that you “just want your child to talk.” Trust me, you don’t just want that. You want so much more for them!)

4. Language doesn’t delay language. The fear of signing is ridiculous and thinking that a child will not talk because they first signed is as preposterous as saying, “don’t let your child crawl or they will never learn to walk.” Babies crawl before they walk and they sign before they talk. If your child has the ability to deliver a spoken language, they will acquire that skill whether or not you sign with them. If they happen to have a speech delay or a disability that gets in the way of speaking, then thank heavens you are signing with them and giving them a way to be understood. If your child’s speech is delayed, it is not the signing that delays speech… it is something else entirely, because communication doesn’t delay communication.

Technology frequently changes and even fails. Cochlear implants can be rejected by the recipient. The implant may fail or simply never work at all. Batteries die and parts break. Programming can accidentally get erased. Sign language will never fail, the batteries will not die, you can use it while swimming, you never have to “turn it on” or struggle to locate it in the middle of the night. Sign language can get soaking wet and it’s always at your fingertips.

Leah will always be deaf. Her first language is American Sign Language. She has learned English as a second language through reading and writing. With her cochlear implant, Leah has learned how to pronounce words and to understand English when it is spoken to her. She is a child who has it all.

If you are considering implanting your deaf child, my recommendation is this – do not put all of your eggs in one basket. Give your child EVERY opportunity to communicate. Give them many tools! Cochlear implants do not work for all children, implants are not always successful and should not be portrayed as a “cure” for deafness. Similarly, hearing aids do not work for all children, they are not always successful and should not be portrayed as a “cure” for deafness. You might want to consider that deafness doesn’t need a cure.

Leah recently saw her ENT, the same one who had asked us to stop signing with her seven years ago. He asked her this time if she would like to implant her other ear, since she only has one ear implanted. She looked at him and said, “Tell me what you think that would really do for me?” He smiled and said, “actually not much, you do so well. Leah, I think you should save your other ear for the future. There are some exciting medical advancements that you will see in your lifetime.”

My two cents: Sign language should be the first choice for a deaf child, no matter what additional options you pursue.